Finding My New Normal

After 6 years of marriage, my husband's Muscular Dystrophy diagnosis and subsequent physical decline, my gastric bypass surgery, depression, and apparent infertility, this is where I find my new normal.

Monday, December 15, 2008

Here is the weather outlook for today and the coming week: Don't you wish you lived here? Man! It's cold. How did the early settlers and Indians survive in this weather? For that matter, how do livestock and wild animals survive? It is bitterly cold. It is so cold that they are saying exposed skin could be frostbitten in 5 minutes today! Brrrrrrr.

We had a fairly good weekend. I baked a bunch of cookies on Friday; gingersnaps and peanut butter blossoms. I also made a batch of mint brownies. I wanted to take a plate to Bob's family Christmas get together and also have some to give to friends. I had a bit of a cookie emergency though when I realized I could not find our cookie cutters. I have no idea where they are. Thankfully my friend Laurie came to the rescue and loaned me a few of hers. I was also able to pick up a couple of new cutters at the grocery store. Turns out it wasn't as much of an emergency as one would think since I didn't get to the cut out cookies at all.

Saturday Bob and I were going to volunteer with our church's service project. However Bob was feeling so bad. He was in more pain than I've seen him in a long time. So he stayed home and rested while I went to the project. It was awesome. We were helping the Plymouth Christian Youth Center. They were hosting their annual childrens shopping event. Each child bought a ticket for $1 and can then come and shop tables of brand new items for up to 5 members of their family. It was awesome and the kids learn the joy of giving to others. They were so excited to pick out presents for their siblings, parents, grandparents, aunts, and uncles. Each kid was also given a stuffed animal and a candy cane. There was live music and lots of fun for all.

Saturday evening we were supposed to go to Bob's family Christmas shin dig but Bob was still feeling crappy so we opted to stay home. When he pushes himself at times like that, it takes days for him to recover. So, no in-law family Christmas for us this year. Poor Bob. He was bummed but somewhat relieved because of all the pain he was in. I could tell he had been trying to get ready to go but when he decided he couldn't, it actually seemed to take some of the pressure to perform away and he seemed a little better. So we spent the rest of the day at home just chilling. I made chili, we ate cookies, and I uploaded pictures from the service event.

Sunday was my birthday but it was the birthday I did not celebrate. We went to church (which was awesome!) and even made it to the early service. Afterwards we were interviewed by 2 people who would like us to lead a ministry/meal group in our area of the Metro. That seemed to go well though both Bob and I admitted that we can't begin to know when to shut up. On the way to church, it was raining hard and we were wary of driving but with temps in the 40's, it wasn't bad...yet.

After church we came home and had lunch while we waited for the Lifeline lady to come and install the Lifeline system for Bob. Once she came, it took her all of 10 minutes to install and test the system and then she left. I feel so much better now that Bob has this. He wears a medallion around his neck with a bottom he can press if he falls or hurts himself and I'm not here. The signal is sent to our hospital and they ask him if he is hurt. If he is, they will send an ambulance and then call me and let me know what's going on. If he isn't, they just consider it a test. This takes such a burden off of me now.

Later on Sunday, I left to go to our church baptism service. I was asked to take pictures and gladly agreed. I got there early and set up but ended up moving when the dunking actually started because I was facing the wrong way. After the service was a potluck like I'd never seen. Lots of fried chicken, macaroni and cheese, yams, honey ham, and a chicken curry dish that made me think I'd died and gone to heaven. So good!

After the service I came home and Bob and I had birthday cake; pink frosted angel food cake with sprinkles. Yum. Then we just chilled out, kept warm, and went to bed. The perfect way to spend a birthday I didn't want to celebrate.

Today we awoke in the frozen tundra. Our apartment faces Northwest and it is freezing! Our cats are piled together in order to keep warm. This is when a wood floor is not so wonderful. Carpet is a terrific insulator and keeps the feet warm. Thankfully I have a couple pairs of warm slippers. Also, I will be making those cut out sugar cookies today and having the oven on will do wonders to keep us all warm.

Thursday, December 04, 2008

Bad News: I got earlier than normal because I had some homework to finish up. When I loaded the pictures, I saw that all the changes I'd made in Photoshop the night before had not saved! So I had to do everything all over again. Grrrr.

Good News: Bob's social worker called and said she was going to order a portable ramp for him so that he can have access to places with, at most, 2 stairs! We can just throw the ramp in the van for when we need it. Also, they are going to cover the Ensure his dietitian recommended and 3 cases were ordered for us. Yay!

Bad/Good News: The medical supply company we were working with to get Bob's new chair is not Medicare certified so we can't use them for the chair. However, this was caught in time so we don't need to go through another whole evaluation, we just need to switch medical supply companies. We now have to work with a company we'd had rough relations with in the past. However, it seems those issues have been worked out and they are now a better company to deal with. So, Grrrr to start but Yay on the finish.

Good News: Meals on Wheels delivered their first meal to Bob today. Yay!Bad News: He thought it started next week so was not home to receive it. Grrrr.Good News: He's aware of the schedule now so will be home at delivery time from now on. Yay!

Good News: A lady is coming to help keep our apartment clean 3 hours a week. She starts on the 15th and will just do the basic cleaning like dusting, vacuuming, mopping, etc. Yay!

Good News: I emailed our church to see if they have any accessible small groups Bob and I can join so we can get to know people there. I received an email back saying it would be an answer to prayer if WE would consider hosting a home/meal group. Seems they've been looking for a host/leader in the West Metro. I talked to Bob and he's all for it. Yay!

Good News: I may have found someone to buy our antique/family heirloom dressers.Bad News: His offer was much lower than I'd asked. Not sure how that will play out.

Good News: I was able to rearrange my class schedule for next semester so all my classes are now on Tuesday (starting at 8am and going through 8pm).Bad News: This means I am unable to attend our church's women's small group I'd wanted to join. There are other groups but the one I wanted to join meets every Tuesday night. Sigh.

Good News: I can apply for scholarships at school to help offset the cost of school and the equipment I always need to buy. Yay!Bad News: I missed the deadline for next semester by 3 days! Grrrr.Good News: I can keep the application and resubmit it for Fall 2009 in March or April. Grray

Good News: Because Bob is on Medicare, his SSI disability check distribution day had to be switched from the end of the month to the first of the month. (I don't know why.) That means we got paid at the end of November and paid our December rent with that and our January rent will be paid at the first of January so our December paycheck is like an extra payday in our pocket! We used it to catch up on the bills we'd fallen behind on. It was like a cool drink of water and so timely! Yay!

Good News: Because of that nice little boost to our personal economy, I had a little extra cash in my pocket and was able to stop at my new favorite Indian restaurant. Turns out, you can get the buffet to go for about $7! I had a lovely lunch...and leftovers for dinner. It's all about the little things. :-) Yay!

OK, so it looks like the good news outweighs the bad news here. I'm just so bummed about missing the scholarship deadline that those feelings are weighing a little heavy on my right now. I'll get over it. In the meantime, anyone want to sponsor me this next semester? I can put your logo on my camera, bag, and tripod! Never hurts to ask.

Tuesday, December 02, 2008

The semester is winding down. After this week there are only 2 weeks of school left before the Christmas break. I am ready for the break. And I'm ready for my next set of classes to start. This next semester won't be so shooting photos heavy since I have a business class, a photoshop class, and a photographer's assistant class. I do have a black and white film class that will require shooting and developing but I hardly think that one class will equal the amount of images I've had to shoot for my three current classes. I am so thankful for the education I'm getting. It's hella scary and intimidating though. I hope as I go I can keep up, grow, and get even better. I talked to some upper level classmen tonight and said how reluctant I am to submit anything to the photo club's photo contests. They encouraged me to submit anyway because how else will I learn and grow? I guess. I am just a first semester student who only knows first semester stuff. How can I compete against students who have been in classes far longer than I have? Still, it doesn't hurt to try does it?

Bob continues to be visited by people nearly every day. Monday he saw a speech therapist, today he saw his OT and a new nurse who assessed him for homemaking help. He qualifies for 3 hours a week which isn't a lot but we just need someone to do basic cleaning. The homemakers would also do laundry (including IRONING!), run errands, grocery shop, etc. We are just asking for the floors to be vacuumed, swept and mopped, the bathrooms to be cleaned, and the furniture to be dusted. Yay! This will really go a long way to help me not feel so overwhelmed around here.

Bob is being visited by both his OT and PT tomorrow and next week we are seeing the gentleman that is helping us with the grant. Bob is getting sick of the visits but it's far better for him to have these people come here than it is to have to take him to all of these appointments. Also, all of these people have been helping him (us) with managing his disease. He is learning better how to conserve his energy so he has the energy to do what he wants to/needs to do all day. I am learning things too. Like what works for him and what doesn't. For instance, right now we are looking for a buyer for our antique dressers because he doesn't have the strength to open them to get clothes out anymore. We hope to replace them with something more accessible...probably from Ikea...something with shelves instead of drawers. Also, I'm learning how to help him with stretches and limbering exercises. He's surprisingly flexible and stretchy but needs help with some things due to not having the muscles to move certain ways. I am also learning to make sure Bob has healthy, protien-rich foods available to him at all times. So now we are stocking the fridge with hard boiled/peeled eggs, string cheese, cottage cheese in single serve containers, Ensure, and such. This is so when I'm not here, he has easy to eat, energy ramping foods within reach.

All these visits and all this education is helpful but it's also like getting smacked in the face with reality. Bob's disease is progressive, it's incideous, it has no cure, and it results in him getting weaker and weaker and losing more and more strength. It's conceivable that at some point (and this is nothing we want to think about right now) he will need help transfering, bathing, toileting, and eating. He may get to a point where I will have to puree his food. He may get to a point where he can't stand or walk at all on his own. These things are things we may have to deal with at some point. There is no telling when or at what point. What is good to know is that we don't have to face this alone. We have help. We have family. We have a church family (finally!). We have friends. That is what we will chose to think on right now.

Oh and finally, this month I turn 41. I am not ready. I don't feel 41. I hang out with kids half my age all week and I have a really tough time seeing myself as their mothers' age(Or nearly) . I just don't feel that old. I feel silly even saying it. I think this is why women lie about their age. I don't feel it so why should I say it? From now on, I will say that I'm 35. Anyway, my birthday is in 2 weeks and I'm not looking forward to it for the first time...in forever. Bob wanted to throw me a party but I vehmently declined. Plus the last party I threw only brought about 6 or 7 of my friends. Why add the humiliation of turning 41 on to that?

Friday, November 28, 2008

I am loving our new floors. They are really much easier to care for and definitely more beautiful than our old crappy carpet. Now that we are farther on the other side of the chaos that was getting them, I can say it was worth it. The cats are still getting used to them. There is a lot of sliding and slipping and scampering. Hee.

On Monday Bob received a lift recliner. He was so excited. It's a beautiful chair and Bob really likes it. Basically he has only lived in his wheelchair or his bed for the past 3 or 4 years. Other regular furniture is just too low for him to be able to get out of comfortably. So rather than sit down on our regular furniture and then struggle to get out of it, he just didn't sit in anything else. Now he has his own lift recliner and it's been heavenly for him.

Speaking of Bob, today we went to the clinic to meet with a team who assessed him for a new wheelchair. His is over 5 years old and has some mechanical problems. Also, it's not as good for him as it was over 5 years ago. His new chair with have some adaptive additions to help him with posture and pain. We are still a good 4 - 6 months away from actually getting said chair but we are on the road and we had a good start today. Now we wait for the medical supply company rep to call us. He will come out to our place to look over Bob's current chair and today's assessment.

Our Thanksgiving was OK. We had one with family yesterday and today we had one with neighbors. Yesterday's was one where I didn't have to do much other than host. Today I did everything and it was lovely. I made a turkey (of course), mashed potatoes with gravy, sweet potato casserole, dressing (do not STUFF the bird), green bean hotdish, and left over scalloped corn and cheesy potatoes from yesterday's feast. Oh, and Sarah Lee rolls. It was so good. I don't usually toot my own horn, but I do admit to being a good cook. Everyone ate everything and pronounced it yummy. There were seconds and thirds offered and taken. People were sent home with leftovers and we still have some ourselves. Overall, a very successful post thanksgiving Thanksgiving was had and enjoyed. Plus I am using the turkey carcass to make a yummy wild rice and turkey soup. Score!

Things at school are winding down but are still going well. I am improving in my picture taking skills and finding new things to love and enjoy in it all. I had to take outdoor twilight/sunset photos of a skyline and while it was freezing, I got some of the best photos I've taken all semester. Tomorrow Bob and I are going to the Como Conservatory so I can complete a couple of other assignments. Classes end in 3 weeks and then we have a nice break before they start up in January again. When new classes start, I will be taking a black and white film photography class, a digital darkroom class, a photographer's assistant class, and a photography business class. I am really looking forward to next semester.

Leaving work in August was the scariest thing I've ever done and yet we haven't done so badly. Yes we are behind in some bills right now but we will catch up in January. Also, I am still waiting for some money from one of my Big Bank Co accounts but it's taking a long time for the paperwork to go through. Once it does we can pay off a bunch of stuff. Yay! Not so yay is the fact that since I've been home, I've seen how badly Bob's disease has progressed. He really does need someone to help him prep meals, get dressed/undressed, and be here in case he falls. He is being assessed for new life helps for showering, eating, dressing, etc. We even have to replace our current dressers with something more accessible for him because he can't pull the drawers out any more. Leaving work in August was the best thing I've ever done.

We found a new church. We think. We haven't been to a church regularly for nearly 2 years. We left our old church for a variety of reasons and never felt called or comfortable in any other church we visited until we started attending Sanctuary Covenant. On Sunday after the service we are meeting with the pastors and we are excited about attending church for the first time in over 3 years. We are also excited about what God might have us do in service to the body there.

Monday, November 24, 2008

Well, Bob did his best and he did really well but when I got home from school, there was still a lot to do. Even though it was 10:00pm, I pushed up my sleeves, turned on some tunes, got out the cleaning supplies and went to work. I managed to get the kitchen and living room cleaned, organized, and arranged before the exhaustion really caught up with me and I had to go to bed. It was 3:00am.

The next morning I got up and started in with the cleaning once again. I had to work fast because Bob's physical therapist was coming over at 11 and another man from the county was coming over at 1:00. I managed to get our entertainment center set up and all the electronics working by the time the PT showed up.

Bob's PT is super nice and was very surprised at Bob's range of motion and flexibility. He really does have an ability to move and lift the muscles he is left with. It's kind of amazing. There are exercises I have to help him with, but surprisingly, those are few and far between. Bob does most of his exercises in his bed before he gets up in the morning. (He's less tired and more able to get them done first thing in the morning.) He's ingenious in the way he uses his bed for resistance.

After the PT left, another man from the county came by to talk to us about the program Bob qualified for. It's one that gives his an annual budget and with that budget he is able to pay people to come in and care for him. He can pay someone to clean, help him with meals, help him bath, get dressed, exercise, etc. He can also get a membership at the Y, hire a nutritionist, see a chiropractor or massage therapist. He can also get adaptive/assistive aids with this money. All this as long as he doesn't go over his budget. This is great news because there is a lot of stuff we have put on hold or gone without altogether because we couldn't afford it. Now Bob can afford these things and his life will get easier. The budget isn't huge, but it's enough. Also, I can get paid as Bob's personal care attendant. There are lots of checks and balances in place so as to not get in hot water with the budget and Bob can't pay me more than he would pay someone else to care for him. But with the money I get from my work study and the money I get from caring for Bob, we should be OK. Whoot! Another thing Bob is looking forward to is a YMCA membership. He wants to hire a personal trainer to work with him on flexibility since strength training is not an option. As his PCA, I can go and work out with him, so it benefits us both. Unfortunately, this program is slow moving so we won't officially be on it until January so right now we are just getting the paperwork done and jumping through the hoops set before us.

After all our meetings and more cleaning, we still had to go get the cats from the vet. I set out in the van to pick them up. On the way I called in a pizza to be ready for pick up on our way home. I got Maisey and Daisy first and buckled their carriers into the van. Then I got the large carrier that held both Zoe and Chloe. Chloe was crying that sad, mournful wail that cats use when they are at their scardiest. On the way to the van I caught a whiff of cat urine and it knocked me over. I'm not sure if she had peed her carrier prior to me picking her up and I just now smelled it or if she peed on the way out to the van. Either way, it reeked and I had to drive home, stop and pick up a pizza, and drive some more before getting them home. Gah!

Once home, I carried Maisey and Daisy's carriers up to our apartment but didn't let them out. Bob came with me to get the kittens (we still call them the kittens even though they'll be 3 in April). The smell of urine was so strong and gag inducing I had to step back. Once we got them into the apartment, we took the carrier to the bathroom hoping to coral them there while we cleaned them and the carrier up. However, the carrier is so big and our bathroom so small that both cats got out. Each one ran to a separate bedroom and hid. So now we had cat pee in the bathroom and both bedrooms. I carried the carrier to the patio and cried. I'd just spent hours cleaning up sawdust from everything we owned and now I'd have to clean cat pee from the rest of our stuff. Grrrr!

While I was on the patio having a meltdown, Bob was able to coral the kittens into the bathroom. I got myself pulled together and grabbed poor Chloe who looked to be the culprit of the peeing incident. She is normally a very fluffy and vain kitty. At this point her feet, tail, and tummy were all wet and she was acting sad/depressed/humiliated. Poor kitty. We ran a bath and bathed her as well as we could. Never having actually bathed any of our cats before, I wasn't sure how it would go but Chloe surprised us. She lay docilly in the water while we soaped and rinsed, soaped and rinsed her. As I soaped her throat and stomach, I could feel her puring away. Once clean, we lay her in a towel and wrapped her tight. She just lay there enjoying the act of us drying her off. Once dry enough, we let her go and she ran off to groom. We repeated the same with Zoe who, though not thrilled, let us bathe her with minimal effort. She did keep trying to get out of the bath but for the most part was compliant enough and never meowed or cried during the ordeal.

Once both cats were clean, we went to work on cleaning the cat pee from everything. I think we got it. Thankfully, it was all surface cleaning and not deep cleaning so that made things a bit easier. Still, I was overwhelmed and would be so thankful for a day that didn't involve cleaning things. Once everything was clean we were finally able to let Daisy and Maisey out of their carriers and FINALLY eat the pizza I'd picked up. The cats were all a little hesitant and freaked out but we knew they would settle down.

The next day, the cats all seemed in better spirits and more settled in. They were unsure of the new floor and there have been a couple of funny incidents when, while running, they couldn't catch their footing resulting in a cartoon like scene of cat feet moving but the cat not going anywhere. They also don't really like the sound Bob's wheels make on the floor but they will get used to it.I was looking forward to Sunday since I didn't have anything planned other than church. Bob and I have been visiting a church we really like a lot. It's an urban church that meets in a school on the North side of Minneapolis. It's extremely diverse, quite large, and for some reason we feel at home there. Sunday was no different in our experience there. We really enjoyed the service and look forward to seeing if and how we might be called to serve there. Next Sunday we are going to an event called Pizza With the Pastors to meet the pastors and get our questions answered.

To end today's post, here are some photos of the new floor. Was it all worth it? Now that I'm on the other side of it I can say yes but last week I wasn't so sure.

Looking at living, dining, kitchen from bedroom areaLooking at living room into the bedroom from dining areaLooking at living room from dining roomLooking at living room from front entrySanta MaiseySanta ChloeSanta Zoe

Thursday, November 20, 2008

So we have new beautiful laminate floors in our apartment. We also have a nice find layer of wood dust on every single linear surface in our apartment. The guys who installed the flooring, cut it all inside our apartment which means we are left to clean up more dust than we had soot after the fire in April. Needless to say, I was a tad overwhelmed this morning as I surveyed the job before me. Still, the floors are beautiful.

We got up early yesterday, finished emptying the living and dining areas of furniture, boxed up the cats, and drove them to the vet's office. It wasn't much fun. Four kitties can make an awful racket when enclosed in a moving vehicle. Poor things. We were going to pick them up today but since we have to clean up the wood dust, we thought it best to leave them another day.

After dropping off the cats at the vet, we went to breakfast. I wanted to go to Key's but there wasn't really one near by so we settled on IHop. It wasn't a bad breakfast. I had a mushroom, swiss, spinach, tomato omelet while Bob had a ham and cheese omelet. We spent some time talking about life, money, the holidays, etc. and had a nice time lingering over coffee. After that, we went to Target to look for a couple of household items. Of course we left with more than our list showed we needed but that's always the way at Target. After Target we went to the wild bird store to exchange some suet. I had purchased some hot pepper suet because I was told the birds like it but the squirrels leave it alone. However, it seemed no one liked it. It just sat in our suet feeder getting old and yucky. I exchanged the red pepper suet for fruit and nut suet and that should make our downy woodpecker friends very happy.

We were told that the flooring guys were coming after 9am and should only take 3 to 4 hours. At this point it was about 11:30 and we still needed to kill a couple of hours. We did the only logical thing and saw a movie. Bob likes action and I like attractive men so we went to see the new James Bond movie. It was FULL of action and not as full of Daniel Craig as I would have liked. Still, it was an OK way to spend a couple of hours.

When we got back to our apartment building, the head maintenance man met us in the garage. He said the floor guys weren't done yet but that we could go upstairs to check it out. So we did. They had ripped out all the old carpet and were laying the under floor. Only one little strip of hallway had been finished with the wood floor. That was disappointing since we didn't have anything else to do to keep us busy and out of the way. Bob suggested he just go hang out at the gas station and I could go to school and work on any projects I had. That seemed logical so that's what we did.

Bob called me at school at nearly 7pm and told me the flooring guys were done and he was in the apartment but that the quarter round still had to be laid and the dust had to be cleaned up. When I got home I marvelled at the new floor. It was beautiful. Dusty, but really amazing. We couldn't begin cleaning up or moving things back in to the main living area until the quarter rounds were put in so we ended up going to bed. It was weird being there without the cats and Bob said it had been really lonely while I was at school. Also weird was how shoddy and dingy the walls now appeared. Huh. The crappy, gross carpet must have diverted my attention from the dirty, spotty walls. Nice.

This morning the maintenance men came and installed the quarter rounds but didn't clean up. I asked about that and they kind of inferred it was up to us to clean up. I said that didn't seem fair since we hadn't been told to put things away or cover anything with plastic sheeting. If we had been told, we would have done that. I said that every surface of everything in our apartment was now covered in dust and it was only just in April when everything had been cleaned after the fire. They said they would tell the office manager but she would have to get back to me.

I started cleaning. The job overwhelmed me. I looked at everything we owned and wondered how and when I would ever be done cleaning it. I had wash everything...the cupboards, the appliances, the containers and jars, the dishes that were left out, the sugar bowl, salt and pepper shakers, the cats food/water bowls, the photographs, paintings, and artwork that hung on our walls. I had to create a laundry pile for anything linen that could be washed. Our sofas had to be vacuumed over and over to remove the fine dust that had settled on them. I looked at the overwhelming task before me and did what any woman with a pioneer spirit would do. I cried. Tears streamed down my cheeks as I washed the counters. Snot spilled onto the freshly washed microwave. My shoulders shook with sobs as I wiped down the aquarium and fish food. I knew I was crying out of frustration and that it would be over and I'd be fine. Bob did not see it that way.

When Bob came in the apartment, he saw me crying and immediately went back out to talk to the maintenance guys. He came back and told me to stop what I was doing, go to the bedroom, pick up a book and relax. I had a hard time doing it but eventually the futility of the job I was doing overcame me and I did as he asked. He said he would work hard while I was at school and work study today to get someone or lots of someones to come and clean our apartment. He promised that it would be at least 75-80 % clean by the time I got home tonight. I am skeptical, but he was adamant, so I left him and our dusty apartment and went to school.

I have no idea how things are going at our home. I only hope Bob is true to his word and able to get the help he promised. Otherwise I just may have to pack up and move. It seems moving would be an easier task at this point than completely cleaning fine wood dust from all our possessions. We'll see. Stay tuned.

About Me

Welcome. My name is Amy. I am married to a hunky guy named Bob. We live in Minneapolis with our 3(you read that right) cats and 1 crazy dog. This is my space to rant, write, whine, and work things out in my brain. Your comments are welcome as long as you are not a troll and don't leave assvice. Read on!